Tag Archives: #SmallestThings

25 Weeks Gestation – Our Beautiful Little Lady

Two years ago I woke early with period type pains.

I was 25+5 weeks pregnant.

I knew something was wrong, but wanted to dismiss it.

The thought of labour at this early stage was very, very scary.

For some reason, I thought the age of viability was 28 weeks. After realising the pains were more significant, more like contractions, I spoke to the maternity assessment unit. They told me to come straight in.

It was a Saturday, so I thought I’d leave dad at home with our 3.5 year old, and drive myself in. I was fully expecting to come home again later the same day. Sadly that wasn’t to be and our daughter was born by emergency section a few hours later.

Having been through an emergency section before with my son, though he wasn’t premature, I knew the drill. I tried to not think about whether or not our baby would survive. I did asked though, and was told she had a good chance. The operating theatre seemed to be jammed packed and noisy. But once it all began things became focused and hushed. The consultant told me my baby was a girl. I asked to see her so they lowered the screen; she looked at me through one opened eye and she looked so beautiful. I didn’t realise how small she was until later.

A tiny baby, far away from home

We were at a level 1 unit, but my new daughter needed to be in a level 3 unit. She was transferred as soon as a space was found, thankfully not too far, but still a two hour drive away. I was transferred the next day and got to saw her later that afternoon.

She was so tiny and hard to make out with all the wires and tubes. The next day I asked on the ward round what I could do to help and they said express milk. I didn’t think I’d have any yet, but after hard work, tears, determination and good support, I was lucky to get a good supply going. It really was the best thing for her and felt so good to be able to DO something. I was expressing far more milk than she was taking, so was able to donate to the milk bank. She luckily had very few problems on her journey through NICU, apart from giving us a big scare on April fool’s day. She was suspected of having Necrotising Enceterocolitis (NEC), but thankfully it didn’t develop. She was on and off antibiotics a lot and up and down with the amount of expressed milk she was taking – it was difficult, but we got there!

Our other difficulty was that I was discharged three days later; we were two hours from home, I didn’t know the area and could barely walk, never mind drive! There was little coordination between the maternity and the neonatal units. I was told there was an on-call room, but that it probably wouldn’t be available for more than two or three nights. Luckily, as it turned out, I managed to have it for the full six weeks of Isla’s stay, and the neonatal unit were brilliant at ensuring this. They also provided me with a daily meal ticket and ward breakfasts and lunches. It wasn’t possible for my son and partner to stay, but we were loaned a flat one weekend and they did day trips once or twice a week. It was very hard being separated, especially for my young son, but it was the only way to manage it. I felt I needed to be there 100% for my baby, so I knew I’d given her everything I could. I generally used the weekends to go home and have a much needed break, but it really is an area of neonatal care that needs improvement, as it’s not uncommon, especially in rural areas for mum and baby to be separated more than they should.

Kangaroo Cuddles and our Extended Family

I soon filled my week days with expressing, sitting by the incubator, and occasionally getting cuddles. The second most important thing, that I would advocate, is Kangaroo care. It has proven benefits for both and mum and baby, once baby is medically stable enough, and it was the best thing for me and Isla. It enabled us to regain some of the pregnancy closeness we’d been robbed of. Most days we would have one or two skin-to-skin cuddles. I have a vivid memory of a very alert tiny baby lying on my chest and looking up at me with the biggest eyes. It was so amazing, at only 30 weeks, and all the other neonatal midwives came to have a look. All the neonatal staff were great and I soon got to know the group of midwives who looked after her, and she was popular with them. Together with the other mums in the expressing room, they became our extended family.

After 6 weeks the day came when Isla was well enough to return to the local unit. From there she continued to make a steady recovery and I was able to have a much better home/hospital balance. I became more involved in her daily cares and once she was out of the incubator, gave her her first bath. The last thing to come was establishing breastfeeding, but that suck, swallow and maintaining breathing action is tricky for little ones!

Isla spent 8 weeks at our local hospital and came home two days before her due date. She was sort of breastfeeding and topped up with bottles and came home off oxygen. She weighed 5lbs and was still tiny, but at least she fitted in the tiny baby clothes range now.

The worry of being at home

Being at home was nerve wracking to start with, and seemed such a huge responsibility. I think you never stop worrying, and we had good aftercare. You somehow need to reclaim your baby and trust your maternal instincts – that comes with time. The thing I was least prepared for was the innocent question of ‘how old is your baby?’ Even now I find myself explaining our story and her two ages. She hasn’t caught up with her corrected age, never mind her actual, and as she reaches the age of two they will stop correcting her age.

She is our beautiful little lady, as she was nicknamed by the neonatal staff, and does amazingly well. She’s crawling and pulling up to standing but not yet walking. It’s a lesson in not comparing to friends babies and measuring her progress from where she started – a 2lb scrap of a thing that fitted into my cupped hands.

Isla Rose

She is a delight and such a happy thing. We held a fundraiser for the neonatal units to coincide with the first world prematurity day of her life, and have taken her back to both neonatal units. We are eternally grateful and can never thank them enough for their kind and compassionate care, who together with friends and family, made such a difficult journey bearable.

With special thanks to Beth Nightingale for sharing her story with The Smallest Things.

If you’d like to help The Smallest Things continue raising awareness of premature birth and the journey through and beyond NICU, then please press the Facebook and Twitter buttons to SHARE Isla Rose’ story.

My Superhero Preemie Powers

Tomorrow my eldest son will turn five.

He has been busy planning his Superhero themed party with great excitement!

And this year’s theme seems pretty apt for my Samuel Superstar.

 

I was 29 weeks pregnant this time exactly five years ago.

I was just starting to think about cots and buggies, cribs and baby grows.

I’d booked onto my antenatal classes, still weeks away, and was yet to confirm my last day at work.

 

This time exactly 5 years ago I felt a sudden panic – I wasn’t ready!

‘You’ve still got 10 weeks to go’ my colleagues told me as I began to fret about baby grows and nappies.

Yet I still felt a sense of urgency – perhaps my nesting instincts kicked in.

Despite this, I could have no idea what was to happen the very next day.

 

Having a premature baby sends you into a wild journey of uncertainty, shock and disbelief.

My son was born just hours after my waters had broken at home.

It didn’t seem real.

 

The room was filled with doctors, nurses and midwives as they attempted to resuscitate our tiny baby for six long minutes.

An alien looking capsule was bought into the room and our son was whisked away.

I was numb.

Just as quickly as the room had filled with people, quite suddenly we were alone.

I’d become a mum for the very first time,

but there were no cries of joy, no words of congratulations and I had no baby to hold.

 

This is how I became a mother, 5 years ago.

 

Becoming a parent to a baby born too soon;

having your baby taken away to neonatal intensive care, is one the hardest things a parent will ever have to do.

Saying goodbye to your tiny baby, leaving them alone in their incubator as you head home empty is perhaps even harder.

 

The NICU journey is tough, the effects of which cannot be underestimated and stay with you long after bringing your baby home.

But the NICU journey can also be special….

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I witnessed my superstar as he took his first breaths without the support of a ventilator, and I was overcome with pride.

I watched in wonder as he learned how to co-ordinate the feeding reflex, (usually learnt within the womb) and saw as his micro nappies began to fit his tiny body.

We spent hours and hours together in kangaroo cuddles as I tried to block out the sounds around me,

And his strength for someone so tiny amazed me every day.

 

Now, five years on, I remember just how far we have come.

He is desperate to be a real superhero, asking me every day how he can get special powers like Superman or Spider-man.

Ideally he would like to be able to swing on webs or fly through the sky,

But to me he is Samuel Superstar, and I think he’s pretty amazing already!

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If you believe that mothers & premature babies need more time together after neonatal intensive care please SIGN our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

#FlamingJune – Taking Action for NICU Mums

One year ago a group of inspiring women pushed me into action. The women are those behind the MatExp campaign, a grassroots campaign, based in the Whose Shoes?® model, seeking to identify and share best practice across the nation’s maternity services.

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Last summer we were asked to take action, to seek to make change, as part of their #FlamingJune initiative to improve the maternity experience. I’d already been campaigning hard as part of The Smallest Things to raise awareness of premature birth and the journey faced by parents during and beyond neonatal care, but now was the time to take real action!

In #FlamingJune 2015 I began a change.org petition, calling upon the government to extend maternity leave for mothers of premature babies.

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The campaign has been debated on Radio 5 live, raised in Parliament during a Westminster Hall debate, featured in the national press and is supported by cross party MPs!  Right now the petition has just under 17,000 signatures – how amazing would it be to reach 20,000 before the end of June 2016?!

radio 5 live reception

This year 2016 may have felt more like wet June rather than #FlamingJune, but the fire to take action and make change still burns.

When my first son was born ten weeks early, I had no idea that maternity leave would begin the very next day, months before we would bring him home. Born too soon, the reality of life in neonatal care is very different from what a mother would usually expect from the early days of maternity leave. Lines, monitors, life support machines and recovery from what is often a traumatic birth. Mothers wait days, if not weeks to hold their babies for the first time and face the agonising journey home without their baby each day. The very real cost of premature birth is not only measured in terms of financial pressures placed on families, most recent studies suggest in excess of £2,000 for an average NICU stay, but also upon the long term health implications for the mother, her ability to return to work and her babies development. Extending statutory maternity leave and pay would give mothers the emotional and financial support needed at a time of great stress and trauma – in turn leading to better postnatal health, a more positive return to work and better outcomes for babies development. We call on the Rt Hon Savijd Javid MP and colleagues at the department for Business, Innovation and Skills to recognise the significant and unique needs of families with children born prematurely and to extend statutory leave accordingly.

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PETITION: Keep signing! – Extend maternity leave for mothers of premature babies

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The Power of Storytelling

Each and every one of us has our own personal story. Our stories of course may be quite different and our experiences unique, but for parents of premature babies our journey into parenthood will overlap and our experiences may be reassuringly similar.

For the last year I have shared my own story of premature birth and of a journey that does not end at the NICU door. I have written about first holds, kangaroo cuddles, grief and loss. I have written about the sudden interruption of pregnancy, the uncertainty of the unit and the sights and sounds of neonatal care that stay with you long after you leave. I write to raise awareness; but I also write because of those who have been before. For the parents who have already shared their own experiences of NICU, whose stories I found when I needed them the most. Yes, each story of neonatal care will be different, but the similarities are often striking and this discovery can bring great relief.

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Storytelling can be an extraordinarily powerful tool – with stories that offer hope, humour, those that make us think or give us courage. Stories which help us to negotiate challenging times, to give us strength and to shine a light on the way ahead. Stories can bring us comfort and let us know that we are not alone. They can educate and reveal a hidden world. They can raise awareness and offer support.

Have you read a story that has helped given you comfort or hope? Have you got a story to share?

We are always on the lookout for stories of premature birth, neonatal care or life beyond (approximately 550-800 words) and we invite you to share yours.

Email Catriona at smallestthings@yahoo.com

Little Lights: A time to remember

Yesterday we took our two boys, born 3image0 weeks and 34 weeks to fundraise on the Bliss Little Lights Walk. It was beautiful and moving – you can’t really beat a candle lit walk around Tower Bridge for a location!

imageSigning up for the walk our plan was to raise money for a fantastic charity whose volunteers had supported me after we came home from hospital, and to remember our own journey and just how special our two boys are.

Rather than reflecting on our own journey though, I found that my thoughts were instead with the families who’s babies our no longer with us… and then watching our own boys that old familiar feeling of guilt kicks in; the guilt you felt in NICU when you thought you were at your lowest, only to speak with another mother whose baby was facing a much tougher time than yours. The guilt you had when you felt empty and as if you’d lost your baby, when you know that other mothers have lost theirs. And the guilt you felt when grieving for the lost time with your baby, that lost final trimester and the lost time to hold your new born, when you know that unlike some families you will eventually bring your baby home.

A journey through neonatal care is often fraught with conflicting emotions and it seems these emotions aren’t left behind when you leave the unit. Parents of babies born too soon have been sharing with us the three words which best describe their journey through NICU; loss, guilt and lucky are words that come up time and time again and are perhaps three words that best sum up the emotions of Little Lights Walk for me.

Brushing aside the guilt and embracing the emotions, you learn to live with them as an ex-prem mum, I enjoyed watching our two boys both still too young to understand what it is all about and felt so proud of all they have achieved; but as I watched the light reflect on the river I took some quiet time for my thoughts to be with the families whose babies did not come home from hospital and who remain loved in our hearts. We had a candle burning brightly just for them and they will all be remembered on World Prematurity Day.

Take Action in 5 simple ways

Support the Smallest Things and take action now in 5 simple waysuntitled (4)

  1. Raise Awareness – share the Smallest Things campaign website via social media and tweet #SmallestThings
  2. Raise Awareness – forward the website link to just 3 friends
  3. Arrange to meet with your health visiting team to share your story; what should they know about babies born too soon and parents of premature babies
  4. Write to your MP, ask them to support the Bliss #NotaGame campaign
  5. ‘Like’ our Facebook page for up-to-date news